Tuesday, May 4, 1999 Published at 04:58 GMT 05:58 UK
Bringing up Edward
Doctors are accused of failing to recognise autism
Ian and Elizabeth Attfield's son Edward was not diagnosed as suffering from severe autism until he was three.
The family who are from Dudley spotted the signs and took him to a specialist in Birmingham to get a diagnosis.
"In Dudley at that time - eight years ago - no-one was prepared to use the term autism," said Mr Attfield.
The family first noticed there was something wrong when Edward was 18 months old when he did not seem to respond to loud noises.
Their GP thought he was deaf or partially deaf.
Spinning and rocking
However, the Attfields realised that he responded to quieter noises, such as the opening of a biscuit tin.
He then began spinning objects and rocking back and forward. They consulted books, searching for an answer.
Edward also seemed to avoid making eye contact. They "put two and two together" and contacted the West Midlands Autistic Society in Birmingham who recommended a specialist.
The group ran support sessions and had talks from experts on issues such as eating disorders.
Many autistic people become fixated on a particular type of food.
Edward, now 12, is currently eating around three apples a day.
Mr Attfield said Edward was given very good one-to-one support in school until he was 11, but has now been put in a class with children with different types of disability.
"It's as if they think he is cured," he said. "It is very difficult to cater for his needs in a class of different disabilities and we are looking for somewhere else."
He admitted this might be far away and that Edward might need to be a boarder.
Mr Attfield said Edward tended not to sleep very long - about four hours on average.
His parents have got round the problem of sleepless nights by building him a little bedroom den with cushions so he can play without any danger of injuring himself.
The Attfields have a 14-year-old daughter. Mr Attfield says they worry that she misses out on attention and has had to grow up too quickly.
The family had to forego a prize-giving ceremony at her guides group recently because they could not take Edward or find a babysitter.
"Babysitting is a big problem because you can't expect a teenager to be able to cope with Edward," he said.
The family have tried to develop Edward's abilities, for example, to develop eye contact by playing games where eye contact is important.
Difficult to go out
He cannot talk, but is able to sign basic things like chocolate and drink.
Mr Attfield said the family were relatively lucky because they got respite care from Dudley social services.
Every fortnight Edward spends the day at the house of a trained worker and on Thursday nights they have access to a trained babysitter.
They find it difficult to go out and have to think of "escape routes" in advance in case Edward has a tantrum.
Both Ian and Elizabeth work part-time, which means that one person is not burdened with all the care responsibilities.
The couple have also set up their own support group in Dudley.